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Avatar universal

high thyroid antibodies and psychiatric symptoms

I was wondering if someone could shed some light on my problem. It all started 6 months ago with depression, crying and anxiety attacks. I lost 12 pounds, lots of hair and had a racing pulse and ravenous hunger. In the past 2 months I have hardly slept due to strange sensations in my arms and feel like I'm going crazy. I was put in a psychiatric hospital for 10 days and placed on antipsychotics and tranquillisers, which I'm still on. I have had thryroid tests and all labs are in range, except that I have elevated TPO antibodies. My doctor doesn't want to start me on thyroid meds because she is worried that they will aggravate my symptoms. I just don't know what to do - my life has completely fallen apart, I can't work, sleep, concentrate or even follow simple conversations. I am in a constant state of panic. Does anyone have any experience with this kind of thing? I feel like I'm slowly dying. Please help!
36 Responses
Avatar universal
HOney I understand what you are going through being bipolar myself with thyroid trouble.Sre your other meds helping at all? and is your doc and endocrinologis that specializes in thyroid disorders?

All the web sites I have been to link mental health and well being to the function of the thyroid.
I am on zyprexa/celexa combo for the bipolar and synthroid/cytomel for my lack of thyroid.I also have a therapist that works with my med manager and I like to say my bi polar is in remission.I take my meds faithfully now for 6years and that is a bi polar record.
Let me know if I can be of any help cause I have been there where you are and I understand.
Prayers and hugs for you.
Love Venora
Avatar universal
Did you have any mental health history before all this?  If not, I can share only my experience.  I had a horrible experience starting this past August.  I had an MRI with contrast to rule out sinus infection r/t ear problems. (from what I learned, the contrast can irritate an already failing thyroid.) I have no mental health history.  About 3 weeks after receiving the dye, I ended up with full blown panic attacks/anxiety, I felt like I was losing my mind.  My eyes weren't focusing properly, and they hurt to move them, my hands were numb on and off, I had horrible headaches, generalized aches and pains, tachycardia in the 150's...etc.  You name it, I probably had it.  Needless to say, I thought I was dying, or going crazy. I looked everywhere for answers.  Family doctor, neurologist, cardiologist, ob/gyn...I felt like they thought I was crazy because nothing was showing up in my tests, at least not in the ones they were ordering.  After months of trying to find answers, nd ENT and OB/gyn diagnosed me with Hashi's/Thyroiditis.  No one had checked antibodies on me until my thyroid was "pissed off" (as my MD put it).  My anti TPO antibodies are >1000.  I also have 3 nodules and a goiter.  After about a month and a half, my panic attacks/anxiety went away.  If this sounds like you, let me know.  I will try to help you through what you are going through.  It is terrifying when you don't know what is going on with yourself.  I felt betrayed by my own body.  When I finally got the diagnosis, I felt completely vindicated as I knew that something was not right with myself.  Hang in there!  
Avatar universal
Thank you both for your support. All I know is that I was feeling well, working, getting on with my life and all of this came on very suddenly with an attack of crying in the shower in late August. I felt like (and still do) that my emotions are not my own and that I can't control my reactions. The only thing that I think may have provoked it was an x-ray that my dentist ordered. I don't know what the test was called but the machine sort of circled around my head. I know that radiation can upset thyroid function but still don't know if this was the cause. In any case, I know that I just can't keep taking these horrible psychotropic meds because I have too many physical symptoms to ignore. BTW, hypo/hyper, what medication did you go on?
Avatar universal
I chose not to take any meds.  I took 4 days of Lexapro and felt worse, truthfully, I didn't believe that was what I needed.  Besides, I wasn't depressed when all this had started for me, just anxious because of all the symptoms.  I can't substitute my advice for your doctor's, this is just my experience and I don't know all your tests, symptoms, mental health history.  I tried relaxation methods (I was skeptical) but it did help me some.  Basically, I broke the cycle of anxiety I was having by accepting that the symptoms I was having were real, and kept telling myself that someone would figure out what was going on eventually.  Some people have to take medications.  I chose to read all I could about anxiety and treatment without medication, and go to counseling because prior to all this happening, I was a self proclaimed stress junkie.  It think that the fuel to anyone's anxiety starts when there are no answers to things that you feel are threatening.  Once you have the answers, your mind can rest and begin healing.  If you feel you are misdiagnosed, keep looking for your answers.
Avatar universal
I looked hard at your comments to see if you indicated whether your doctor is an endocrinologist or a general practitioner. If you are not seeing an endocrinologist AND an endocrinologist who specializes in thyroid problems, I think you really should. After I was diagnosed with mild hypothyroidism, *I* was the one who was worried that taking medication to support my thyroid gland would aggravate my symptoms. I was scared out of my wits, actually. When I asked my really wonderful endocrinologist if my thyroid gland's struggling could be causing paradoxical (meaning: contradictory) symptoms, he sat back in his chair, looked thoughtfully at the ceiling for a very long time, and said, "It could be...We (meaning the field of endocrinology) just do not know enough to be able to say."

We had this conversation two months after my endocrinologist had diagnosed hypothyroidism. At the time, I felt relatively well, other than a problem with sleeping that had been slowly but steadily worsening. Then my thyroid problem began to make its presence apparent. When I read your account of symptoms, hair loss is the ONLY symptom I do not recognize as one of my own.

Although I ordinarily shy away from giving people advice, I feel as if I want to beg you: Please go looking for some skilled help without further delay. By "skilled" I mean 1) and endocrinologist, 2) who is interested in thyroid problems and deals with them a lot, and 3) who, like my endocrinologist, will take you seriously when you say that you really do not think your psychiatric symptoms are coming from unresolved emotional conflicts. The fact that you have elevated TPO antibodies should cause any competent endocrinologist to toss aside whatever psychiatric diagnosis was pasted onto you and look hard at what your thyroid gland is doing (or not doing).

I am not a physician, and I cannot make the sort of promise I wish I could make, but I at least can hope that you might have the same experience I had. Despite my being scared silly as I started to take medication (in mid-September), the medication for hypothyroidism has done nothing but good things for me.

I would tell you what medication I am taking if I thought it would be helpful, but I think it is not really relevant to your difficulties of the moment. If I am guessing right, and if you--like me--are having hyperthyroidism and psychiatric symptoms from what actually is a case of hypothyroidism (which you may have had for awhile, as I can see in hindsight that I did), then what matters is finding a specialist who will work with you in a supportive partnership in getting your problem under control. Medication decisions are better made by a patient and physician together than they are by us laypeople forum members.

By the way, my preceding paragraph was related to thyroid medication. In regard to medications for depression or anxiety, people with thyroid problems make different decisions about whether to take medication or whether to "tough it out" until the thyroid medication eases the psychiatric symptoms. There is no "right" decision, especially because the cognitive/emotional effects of a thyroid problem can absolutely pound on a person. Just ask me!
Avatar universal
Just before logging off for the night, I looked again at your description of your symptoms. Because what you have been experiencing is so very, VERY much like what I have been through, I want to tell you a bit more about what I experienced once I started taking medication. If you find an endocrinologist you feel comfortable with, and if the two of you decide that it makes sense to try some medication for hypothyroidism, it might be good for you to know about the experiences of someone else who also had a racing pulse and ravenous hunger as symptoms of hypothyroidism. It does not necessarily follow that you would have the same experience I did with thyroid medication, but just in case....

When my endocrinologist realized how scared I was to start taking medication, he suggested that I take 10 days worth of half of the weakest dose manufactured, or 12.5 mcg. of levothyroxine (I take a brand name, not a generic, but levothyroxine is the catch-all term for the medication that is chemically identical to the hormone your thyroid gland produces). My endocrinologist and I termed my initial 12.5 mcg. dose a "sissy dose."  He said it was too weak to make me feel better, but at least it would show us whether the medication would worsen my paradoxical symptoms. Fortunately, my endocrinologist recognizes me as an accurate reporter, so when I told him that after nine days of a sissy dose, I actually DID feel better, he did not doubt me. He simply said, "Your system apparently is very sensitive to thyroxine."

The next step up the scale, to 25 mcg., showed just how sensitive my system really is. My blood pressure went up substantially, and I often had spells of a pounding heart. I still say that the medication has done nothing but good things for me. By my choice, however, I have eased my way up the scale 12.5 mcg. at a time, which is a smaller increase than what my endocrinologist usually prescribes. With each increase, I have endured a few days of blood pressure readings that are higher than I like to see along with the pounding-heart episodes. Then my system adjusts and everything simmers down again.

The medication adjustment process has not been quite that simple, though. I have felt as if I was on a slowly moving symptoms roller coaster. Days of feeling much better have alternated with days of feeling perfectly awful again. All the same, my overall level of well-being has risen steadily if I average the good days with the bad. It was quite a few weeks before I felt well enough to describe this up and down pattern to my endocrinologist, ask him if he had seen a patient with that pattern before, and feel sufficiently brave if he said, "No." Instead, when I asked the question, he smiled in response as he said that he sees about two people a year who go through a roller coaster experience.

In addition, 28 days seems to be the point at which my thyroid gland tells me that although it appreciates the medication support I have been providing for it, the support is not enough. I have dramatic drop in well-being, I KNOW I am ready for another dosage increase, and the blood tests are almost a formality.

All of this up and down stuff is straightening out as I get closer to whatever an optimal dose of medication will be. I have a higher level of well-being, and a more stable level of well-being, with each medication increase. Still, the process as a whole has felt like a long haul, and indeed, it has been. It is for probably the majority of people with hypothyroidism. Step One is for you to find a competent endocrinological helper, but then once you do, be prepared for the bumpy times to continue for awhile. Do remember, though, that people at this forum are right when they say, "It DOES get better." It seems not long ago that I found that very difficult to believe, but it is true.

Best wishes to you, and please let us know how you are doing.
Avatar universal
Jenny,

Thank you so much for taking the time to write those posts. They definitely give me an insider's perspective on the whole thing. Were you ever prescribed any kind of psych medication? The stuff they have me on doesn't seem to work at all. I still get panic attacks no matter how much medication I've taken. I have also noticed that I have a very poor memory and just cannot think clearly. It is very distressing because I have always been so proud of my memory!!  
Again, thanks for your insight - it's nice to know someone cares!
juju
Avatar universal
a long time ago before they knew a lot about the thyroid ther actually was a lot of people in mental institutions with undiagnosed thyroid problems.
Avatar universal
sounds like you felt like i felt. except my thyroid was low. i felt like i was slowly dying and had the symptoms for years. i had hard time talking or concentrating on anything. it was hard to even do the dishes. I felt like i was going insane. had feelings of doom and didn't even feel like a human being anymore. just a dead body walking around. when your thyroid is low your mental and physical abilities deteriorate. felt like 10% of myself.but u said your thyroid level was normal? I would go to a specialist and have it rechecked.
Avatar universal
Jenny,

Your kindness and compassion are giving me great comfort during this very difficult time. Everything you say makes sense and I thank you again for taking the time to help me. The doctor I am seeing is only a general practitioner and I am hesitant about going to see an endocrinologist because I have heard that many of them in Australia (where I live) do not treat patients with elevated antibodies when labs are still in range. The problem is that I cannot afford to keep seeing doctors as this whole process has already cost me thousands of dollars (lost revenue, tests, hospital admission).
I really don't know where to go to from here. I am 31 and have almost lost my marriage because of this. I am staying with my mother who is becoming sicker as she watches me go downhill. I am so tired that I spend the day in bed, and lie awake much of the night. I don't know why I am telling you all this - I just feel so disempowered by the whole situation - I cannot even remember what normal feels like. You don't need to reply to this post - I think I just needed to vent.
Thanks again for your kindness
juju
Avatar universal
Hi, Juju--

I am sorry to have been so slow with a reply. I do not have internet access at home, so I was away from the forum all weekend.

I DO care about you, and in fact, I was thinking about you this weekend. Our symptoms are highly similar, but I have had a much, much easier time than you. By the time I developed "just can't think clearly" problems along with depression and a lot of other cognitive/emotional symptoms, I already had a diagnosis of hypothyroidism, so at least I knew what was going on. More than once, I have thought of what an unbelievable panic it would have thrown me into if my thinking and emotions had started to go out of whack with my having had no idea what was going on.

This weekend, I was thinking specifically about your comment, "All I know is that I was feeling well, working, getting on with my life and all of this came on very suddenly." As I mentioned in my comments last Friday, I still felt well, both physically and emotionally, when I was told I had hypothyroidism. Although my symptoms came on somewhat more slowly than yours, there was a stretch of time, several weeks in length, during which an assortment of thyroid-related symptoms developed. At the end of that time, I felt as if I had slid down the slide of a very deep ditch, and now I was at the bottom (feeling very much bottomed-out), looking up at the very top (which represented the wellness I had had in the recent past), and thinking, "How did I get here?" It would not be such a distressed question for some of us if the world of medicine could pull us back up to the top quickly, but because of the way the thyroid gland works, the climb back up tends not to be a speedy one.

The last time I saw the physician who knows me the best and who is immensely human, sympathetic, and caring, I "got it off my chest" in regard to the burden on my morale that my thyroid problem has caused. I was realizing that the experience would have been easier if I had known it was coming. If there had been a magical way for a physician to foretell the future and tell me, "You are about to go through a very difficult time, and you will come out of it eventually, but you will feel unlike your usual self for several months' time," then I could have made preparations--both practical ones related to getting my life in order and emotional ones. I could have "braced myself," in other words. It has been so difficult to feel as if, with no warning, I went from a state of just what you described: feeling well, working, and getting on with my life to a state of barely being able to hold daily life together, day after day after endless day.

How much WORSE it must be for you. As I said, at least I had a diagnosis when my symptoms started, and I had seen--and made a good beginning on a rock-solid relationship with--an endocrinologist who is a perfect health care partner for me. I cannot even imagine what it was like for you to tumble down into the ditch I have described and end up in a psychiatric unit for ten days. With the symptoms you described, it is reasonable that a health care provider would want to be certain you did not have unresolved emotional conflicts that were causing the symptoms, but Rule Number One in psychiatry and clinical psychology is to rule out an organic cause of the symptoms as a first step.

Let me pause here long enough to say that many years ago, when I was in my 20s (I am 56 now), I spent a long spell in psychotherapy. It was enormously beneficial. I learned how helpful a competent psychotherapist or counselor can be (although I also have learned how many incompetent or barely competent people there are in the worlds of psychiatry and clinical psychology). The point may come at which you want to seek some counseling to help with the anger that you either feel over the way you initially were treated or that may develop as you are able to look back on the situation.

Having been prescribed psychiatric medication in the distant past, I know that it is VERY important not to stop your medications abruptly. I came into work this morning with it at the forefront of my mind to write to you to say that.

I am not at all surprised, though, that the stuff you are taking is not working at all. If you have a problem with your thyroid gland, which seems like a good possibility, it makes sense to me that you could be having panic attacks even though you are taking medication that supposedly will prevent them. As for your poor memory and inability to think clearly...oh, my, what a book I could write about that. Such symptoms certainly can go along with major unresolved emotional conflicts, in which case everything that promoting healing ("talk" therapy as well as medications) would tend to help. When a thyroid gland is fuzzing over your mind, however, nothing will help but getting the thyroid problem under control.

You and I are alike in having tip-top memories. Although the process of getting my thyroid gland adequately supported with medication has been a bumpy process for me, the workings of my memory have been the most clear-cut sign that finally, I am doing significantly better overall. Once again, I can retrieve items from my memory as effortlessly as I used to.

There is hope, in other words! Are you planning to look for an endocrinologist? I agree with Thyroid Man (who could have been speaking for me as he described how he felt with an untreated thyroid problem). Not only should you probably have your thyroid-related blood levels rechecked, you might be surprised by an endocrinologist's reaction to the blood tests you already have had that you were told were all in range. If you have started to do some reading about hypothyroidism, you are learning that the thinking about what level of thyroid stimulating hormone (TSH) equals "normal" has been changing and is continuing to change.

I could be a case study of the foolishness of the thinking of bygone days (although the thinking is not at all bygone with some physicians) that not until a TSH level was as high as 5.0 was treatment warranted. I went from having every reason to feel on top of the world, and feeling it, to feeling (as Thyroid Man put it so well) like just a dead body walking around, and my TSH level was "only" 4.11. That level had warranted a diagnosis of subclinical hypothyroidism, by the way, along with an "It should be treated" comment from my endocrinologist. In addition, I think I have heard of instances of someone's having a normal TSH level ("normal" according to up-to-date thinking), but an endocrinologist said that treatment was warranted on the basis of TPO antibodies and symptoms.

Since I cannot know all of the aspects of your situation, the situation may not be as clear-cut as it seems to me from a distance. On the basis of what you have written, though, it seems obvious that you need to see an endocrinologist who specializes in thyroid problems. That is doubly true because my advice that you NOT stop the psychiatric medications you were given is sound advice, but there is a possibility that one or more of them is aggravating your thyroid problem and making your symptoms slightly worse. The physician who does not want to prescribe thyroid medications because she is afraid that they will make your symptoms worse either is not an endocrinologist or is not necessarily the right endocrinologist for you. I hope that you can find your way quickly to someone who can review your entire situation with real insight (including the insight that hypothyroidism CAN cause anxiety, no matter how contradictory it may seem).

Please keep in touch and let us know how you are doing. The members of this forum are the most caring group of people you will never meet. ;o)

Sending you an extra dose of caring,
Jenny
Avatar universal
One more question: Do you have the results of your recent thyroid-related lab tests? If you have the reference range for each test as well as having each number, both pieces of information are helpful. I am careful not to be an amateur physician, so I am not likely to have a lot to say about test results, but if you have the numbers at hand, I am very curious.
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